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[personal profile] hummingbirdmadgirl
http://bostonherald.com/news_opinion/opinion/op_ed/2014/04/graham_justina_pelletier_treated_worse_than_a_terrorist

this has been getting a lot of traction on my FB feed lately, the gist of it is painting children's as evil monsters who are destroying a kid's family and health over a debatable diagnosis. i doubt we know the whole story, but the whole case just makes me uncomfortable.

right about now, seven years ago, i got diagnosed with mastocytosis. getting there was a tremendous undertaking that was constantly trainwrecked by bad doctors who misread tests, ignored pathology findings, ignored symptoms and instead went down paths that suited their own specialty. it was seriously insane. within a short time period i had doctors telling me i had grave's disease, multiple sclerosis, epilepsy, failure to thrive, anxiety disorder, pretty much it just got to the point where it felt like doctors were throwing darts at a wall and just picking whatever they felt could stick. one of the biggest problems was that i was being sent to a ton of specialists and each specialist wanted to be the one to fix me, because that is what doctors do, that is what they want to do, they want to fix broken things.

i wrote about it at first, though hesitantly and generally in a white washed manner because i didn't want to really express the hysteria that was going on in my mind. i remember when one of my doctors gave me the diagnosis of temporal lobe epilepsy, sitting up with ethan for hours, reading every medical journal i could get my hands on, every report about epilepsy and sobbing that it -wasn't- the right diagnosis, that it barely made sense to me, that i knew that it wasn't right, in my gut, in my brain, i knew that wasn't what was wrong (and rereading the criteria for it now, she was really fucking reaching with that one). but neurology was her specialty and she was trying to find a neurological explanation for what was happening to me and since i had a lesion on my temporal lobe (which would later be explained by the correct diagnosis), went with that, since the testing for MS that i'd had had come back negative (and eventually the testing for epilepsy would too). i remember the day she told me she thought i had epilepsy, excitedly showing her resident that a bump on my hand would react if touched, telling the resident it was something called a darier's sign. i'd never heard of it before but it seemed sort of inconsequential at the time...i was having these weird episodes where i felt like i was choking, my heart felt like it was going to explode, my nose would start bleeding, and i felt like i was going to die, so i didn't really care if my skin seemed particularly sensitive...plus, years earlier i'd had a similar lesion tested by a dermatologist who determined that it wasn't skin cancer (which was the concern since i'd had a few bad burns and am pretty pale and have a family history of skin cancers), but that it did have an abnormally high number of mast cells in it but it was probably nothing and she could laser the remaining ones off if i was concerned about the aesthetic impact that had on my torso...so when it was pointed out that i still had weirdly reactive bumps on my skin, i didn't care, someone had already said they weren't a big deal.

and of course, in the long run, that overlooked symptom ended up being the first one that, when i saw the -right- doctor, was the one that got me on track to getting a diagnosis that wasn't based on trying to cobble unrelated symptoms together, something that would get discovered a few days later by a (thankfully different) dermatologist i saw randomly for something else, but i've gone into that story a bunch of times and it doesn't bear repeating.

rereading my journal from that time period, i'd stopped writing about all my doctor appointments and all the tests that were being run because i felt like i was going insane. while my health had never been particularly good, it had exploded that spring, into a downward spiral that no one could adequately explain, just throw darts around and try to find something that made sense. i was tired of saying "we think we found an answer" only to follow it up with "oh nevermind, false alarm" because the whole process was so tiring. going on medications that made me worse was so tiring, being sick was so tiring, having all sorts of invasive procedures was tiring, and after every failed appointment, every frustrated specialist, every night in the ER, i was becoming more and more convinced that i was losing my mind.

then i randomly saw the right doctor who was able to see the entire picture and present me with the correct answer, one that has been, for the past 7 years, indisputable. every thrown dart hit a bullseye. it was no longer trying to cobble pieces of different puzzles together, it was real, it was incurable, but it was over. i can't say i was happy, but i was relieved. though in hindsight i can't say i'm not angry. -2- separate doctors had confirmation that i had some abnormal amount of reactive mast cells (the dermatologist who offered to laser them off as if my only concerns were cosmetic, and the neurologist who excitedly showed the darier's sign to her resident) but instead of looking at the whole picture, they focused on neurology and aesthetics respectively. if either one of them had been willing to actually think outside of their boxes, they could have put the picture together, but they didn't. they were short sighted by their specialties.

this was -nothing- compared to when i had to go through some psychological testing later on down the road for SSDI. this is par for the course for the hearing and of course you see a court appointed psychologist and take a standardized test to determine what's wrong with you. they don't talk to you, they don't look at your medical chart, you just take a standardized test, after which they interview you. when i got the results back, i was literally told that i suffered from a somatoform disorder that was responsible for the exact same symptoms that were textbook for the bone marrow disorder that i had, a disease that was confirmed through blood, skin, urine, and bone marrow testing, a disease that i clearly had, there was absolutely no room for interpretation. so somehow, ignoring the fact that getting diagnosed with mastocytosis takes on average -10 years- from onset of initial symptoms, i was told that up until the day of my diagnosis, my symptoms were purely psychological and that somehow I just managed to manifest the exact set of symptoms for a disease i'd never heard of, that practically no one had heard of, and that once i was diagnosed with the physical ailment, i was somehow cured of my somatoform issues.

-this- specifically is what creeps me out about the case in the link i posted above. i literally had a doctor tell me that while the mastocytosis remained undiagnosed, the symptoms it caused were solely psychological, even though i had mastocytosis during that time period, it just happened to be undiagnosed. HOW DOES THAT WORK? i'd never heard of masto before i was diagnosed with it, i didn't go doctor hunting trying to find one that would diagnose me with some other mast cell disorder that defies pathology (it exists, it's called MCAD) it was literally someone saying to me, with the utmost amount of confidence that I was totally healthy until I wasn't and that the fact that i was symptomatic prior to diagnosis was totally unrelated to the disease i was diagnosed with. that the -day- i was diagnosed was the day that i became physically ill and that everything else prior to that was essentially coincidental. that i manifested symptoms for a disease that i didn't even know that i had.

that's really fucking scary when you think about it. at least in my case, i was a grown woman with a pack of doctors behind me who called bullshit on that and did so very quickly. but if i was a kid? if i didn't have someone as amazingly supportive as ethan to have my back during the whole thing? it would be a nightmare. honestly, it was a nightmare, because i felt judged, i started to second guess everything, even though my bone marrow clearly spells out that i have, and have had for a while, a pretty serious physical ailment. but some standardized test said differently and that scared the hell out of me. it reminded me of every doctor who stubbornly tried to fix me as long as fixing me meant that i fell under their area of expertise, all the false starts, all the misdiagnosis, all of it came rushing back and it was paralyzing. but i had the agency to not have to be seen by those doctors, to choose my own, hell i could've just not seen any doctor if i wanted to, because i was an adult and that was my right. so this case with the pelletier kind of freaks me out, only because i've -seen- the other side of doctors trying to do what is best and failing miserably in the process. i lived it firsthand, and honestly, there's a really good chance that my health could've deteriorated a lot more than it did had i not had a massive stroke of luck that to this day i swear is a miracle*.

i don't doubt that the doctor's at boston children's have her best interests at heart, i really don't. rare diseases though, are tricky, and rare incurable diseases are even more frustrating for doctors because they like to fix broken things, and some of us are unfixable.

that said, because i want to end this on a positive note, i've been sick for 7 years. at times it sucks and is annoying. i'm missing out on all the fancy cocktails, on gastropubs, on lots of random stuff that i was sort of holding off to do "later". however i've adapted, and i think i've done a great job of it. in some ways i'm probably healthier than i was prior to my diagnosis. i eat better, i exercise more efficiently, i take care of myself better overall. i don't find myself battling against the restraints that this disease has put on me, i've just tried to find ways to cheat the system or just accept it for what it is. knowing what was wrong me with afforded me those opportunities. having doctors work together in concert with each other afforded me those opportunities, having a phenomenal partner afforded me those opportunities, refusing to see myself as a lost cause afforded me those opportunities. i hope that things with pelletier and boston children's eventually get to the point where she can say the same things.


*seriously, the doctor who saw the constellation of symptoms and put them together was sitting in for the first dermatologist i'd seen, as she was on maternity leave. then he left boston right after getting me on the right path with the diagnosis and directing me to doctors he knew were better suited to treat me. it was like he just came out of nowhere, saved my life, and vanished. it's remarkable beyond words to me. to this day i cannot believe how lucky i was that he happened to be the doctor i saw, that that first idiot was out on maternity leave, or that he knew my future immunologist and had happened to see a few cases of masto in children. so many random pieces had to fall into place for that to happen that 7 years later i -still- can't get over it.
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